Currently there are no nationally funded trials investigating treatments or cures for facial palsy.  This leads to uncertainty with regards to best practice and treatments.  Despite recognition that conditions such as facial palsy are neglected in terms of research funding, this situation is unlikely to change.  

In order for the right trials to be funded, we need to understand what questions patients, carers and health professionals think are the priorities to answer. 

Facial Palsy UK is looking to raise £20,000 in order to push facial palsy research onto the research funding agenda.  This money will fund a Priority Setting Partnership in association with the James Lind Alliance ( http://www.jla.nihr.ac.uk) and would see a list of priorities published for researchers looking into the causes, treatment, prevention and consequences of facial palsy. 

What does the James Lind Alliance (JLA) do?

The JLA facilitates Priority Setting Partnerships which:

• bring patient, carer and clinician groups together on an equal footing
• identify treatment uncertainties which are important to all groups
• work with all groups to prioritise the uncertainties
• produce a 'top 10' list of jointly agreed uncertainties, as research questions to be presented to funders.

What are treatment uncertainties?

There are uncertainties about the effects of treatment when they have not been addressed in research, meaning people may suffer unnecessarily.  Patients have a right to know whether treatments may do more harm than good or which treatments are better than others. With little research currently being done in the area of facial palsy, medical information available to the general public is often conflicting, creating much confusion and uncertainty for those affected. 

The JLA definition of a treatment uncertainty is that:

• no up-to-date, reliable systematic reviews of research evidence addressing the uncertainty about the effects of treatment exists
• up-to-date systematic reviews of research evidence show that uncertainty exists.

It can also include other health care interventions, including prevention, testing and rehabilitation.

What is the JLA Priority Setting Partnership process?

The James Lind Alliance provides a method of getting patients, carers and clinicians together to jointly decide priorities.  A steering group of up to about ten people will be created including people with real experience of facial palsy and the problems at hand. A large scale survey will also be run over three months.  A further process will take place where priorities will be narrowed down by patients, carers and clinicians to approximately 35 questions that need answering. A final workshop will then take place with up to 30 people invited to take part. A 'top 10' list of jointly agreed uncertainties will be agreed. The whole process is expected to take 12-18 months.

Where does the £20,000 go?

• JLA Advisor time, ensuring transparency and a systematic approach
• Creation and analysis of Patient/Clinician survey 
• General admin
• Data Collection/Analyst
• Final Priority Setting meeting (inc. facilitators, workshop materials, etc.)
• Investigations to ensure research is not being duplicated
• Venue and travel costs

What happens next?

JLA Priority Setting Partnerships can make research happen by promoting their top 10 priorities to key people:

• patients and carers
• research funders
• researchers and
• the wider research and policy community

Why we must act now

Some of the current treatments of facial palsy are at risk for withdrawal of funding due to the lack of large scale studies to support their use. 

Already Facial Palsy UK has been contacted by patients who have had difficulty in being referred for treatment.  Please consider making a donation via this page however small to support this important cause. If you prefer to text donate, we have added a QR code to the images which will automatically create a text donation message for £3.  Alternatively you can send a text message to 70070 with the message FPUK88 £3. Change the amount to suit, it can be £1, £2, £3, £4, £5 or £10. 

If you would prefer to donate via a different method please visit our website here http://www.facialpalsy.org.uk/support-facial-palsy-uk/donate/1354/ for more information.

Facial palsy can happen to anyone, young or old, at any time, there are more than 30 different causes of this condition. Please read some of our personal stories to gain an insight into this condition and how it affects people:

http://www.facialpalsy.org.uk/about-facial-palsy/personal-stories/tumours-cancer-stories/haileys-story/455

http://www.facialpalsy.org.uk/about-facial-palsy/personal-stories/trauma/bethans-story/287

http://www.facialpalsy.org.uk/about-facial-palsy/personal-stories/congenital/claires-story/353

http://www.facialpalsy.org.uk/about-facial-palsy/personal-stories/bells-palsy/marvins-story/481

http://www.facialpalsy.org.uk/about-facial-palsy/personal-stories/bells-palsy/selmas-story/480

Thank you..

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